Where else to put this but "Off-Topic"? I'm not sure why I'm writing this. I guess I just need to get it off my chest.

Charles (not his real name)is a 22 year old patient I am taking care of. He has a severe form of Muscular Dystrophy and has outlived his life expectancy, but is now near the end. As his muscles have disintegrated, he has lost all ability to move, talk, and eat. His skin has broken down and now is covered with painful open sores.

His breathing is shallow and slow, as the muscles that carry out that function are ceasing to function. He is heavily medicated with painkillers so he seldom opens his eyes. He did have a period of lucidity today, interacting with staff, laughing and smiling. Its not unusual for an individual to have such a rally just before the end comes. His mother is laying beside him in bed, wanting to be as close as possible when his final breath is taken. She has known this day would come since he was born. I guess that doesn't make it any easier.

I've seen patients die before, but usually not this young. I have kids of my own this age. Once I was this age. I think of all of the things in life that he will miss, good and bad. How is this fair? Why did he have to have such a short life of suffering? I know. Everything happens for a reason. In other words, there is no answer.

But in my usual self-centered way, I also think, "Has my life really been so bad? Do I exagerate the pain and suffering I've experienced for the sake of drama? Or would I have been better off leaving the planet like him at 22? Why did I get chosen to get so messed up? Why must I stick it out to the end? And how many years do I really have left to make things right before I die? I know. Everything happens for a reason. In other words, there is no answer.

All I know is that for whatever time I have left in this world, my job is to live well, laugh often, and love much. Bessie Anderson Stanley wrote a poem in 1904 titled "Success" which sums it up:

He has achieved success who has lived well, laughed often, and loved much; Who has enjoyed the trust of pure women, the respect of intelligent men and the love of little children; Who has filled his niche and accomplished his task; Who has never lacked appreciation of Earth's beauty or failed to express it; Who has left the world better than he found it, Whether an improved poppy, a perfect poem, or a rescued soul; Who has always looked for the best in others and given them the best he had; Whose life was an inspiration; Whose memory a benediction.

Edited by Jude (11/01/1310:10 AM)

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I will remember youWill you remember me?Don't let your life pass you byWeep not for the memoriesSarah McLachlan

Has my life really been so bad? Do I exagerate the pain and suffering I've experienced for the sake of drama? Or would I have been better off leaving the planet like him at 22? Why did I get chosen to get so messed up? Why must I stick it out to the end? And how many years do I really have left to make things right before I die?

I don't have much to add...

Such a humbling post.

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Husky

"Only the solitary seek the truth, and they break with all those who don't love it sufficiently." - Pasternak

An update: Its been a week since I wrote the post above. I left work last Sunday morning, expecting Charles to be gone by the time I came back to work on Wednesday night. He was in such a weakened state, and with the with-holding of nutrition and water, it seemed likely that he would expire quickly. But here it is early the following Sunday morning, and he's still hanging on to life. Obviously deteriorating, but still hanging on. Although I generally feel uncomfortable about the practice of with-holding food and water to hasten death, he is such poor condition that I am hoping for him to go soon.

His mother showed me some pictures of him as a happy small boy, before the MD began to disable him. He looked like such a normal kid. School portraits, playing ball, posing with his puppy....so unlike the totally disabled young man I've come to know. I actually felt happy seeing the photos, knowing that he had had some portion of his life spent enjoying just being a normal kid.

The hospice worker helping out with his end-of-life care has said that Charles is holding on because he has some unfinished business. Maybe that business is showing people, people like me, that no matter how troubling life gets, it is possible to withstand it to the end, with dignity, peace, and serenity. I will try to hold up that standard in his memory.

Jude

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I will remember youWill you remember me?Don't let your life pass you byWeep not for the memoriesSarah McLachlan

Thanks for this post Jude. Seeing someone fighting with so much strength against so many difficulties is giving me other perspective. Charles is immense strong person and we all could learn something from his story.

Another Update: Another week has gone by and against all odds, Charles is still here. Nearly two weeks without nutrition or fluids, with his disease destroying his body. There's not really any medical explanation for it. I'm giving him pain medication every half hour, but I know its not helping him much. It actually hurts to see him in such distress.

I'm supposed to remove my emotions from this kind of situation, maintain my distance so my feelings don't cloud my clinical judgement. But I can't. I need to feel all this. I need to know what loss feels like. I need to feel pain thats not all about me and my problems. Then I need to go home and hug the hell out of my kids, and thank God for them.

No matter how much pain exists in this world its still an amazing place with so much to be grateful for. I need to remember that.

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I will remember youWill you remember me?Don't let your life pass you byWeep not for the memoriesSarah McLachlan

His spirit is beautifully sad in its strength. I hope he is surrounded by those that love him when he takes his last breath. Thank you, Jude, for sharing such a personal experience.

Nothing, not even the abuses, changed my life more than the last days of my spouse and being there to tell her it was okay to move beyond this realm. Death can be as beautiful and freeing as life itself.

And Jude, it was during these latter days when I experienced the visualization of the angels. You have given this boy, and his family, such a gift of love. Thank you man, for being there for them. For him. Be still and listen. Something is here for you, something more than you realize.

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